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Emma Heming Willis wants the media to do better in reporting on her husband and family life since his condition progressed from aphasia to frontotemporal dementia (FTD).
“It’s Sunday morning and I’m excited,” she wrote in an Instagram story today. “I just got harassed by clicks. I was browsing, minding my own business, and I just saw a headline that had to do with my own family. The headline basically says there is no more joy in my husband. Now, I can tell you that is far from the truth.”
Heming Willis went further.
“I need society and whoever is writing these stupid headlines to stop scaring people. Let’s stop scaring people into thinking that once they receive a diagnosis of some type of neurocognitive disease, “That’s it.” It’s over. Let’s pack it up. There’s nothing more to see here, we’re done.’ No. It’s the complete opposite of that, okay?
Heming Willis admitted that there is “pain and sadness,” but it is not the dominant status.
“You start a new chapter and that chapter is full; let me tell you what it is about. “It’s full of love, it’s full of connection, it’s full of joy, it’s full of happiness,” she said.
Heming Willis has kept her husband’s journey documented on social media, showing him at amusement parks, on top of the “Die Hard” building and in candid shots around the house.
He blamed a lack of education for the stories he disliked.
“We are being educated by the wrong people. People who have an opinion versus an experience. People who have not taken the time to properly educate themselves about any type of neurocognitive disease. Why can I be so bold and say that? Because I see headline after headline and advertisements of misinformation. I’m not even talking about my family… I’m just talking about basic dementia awareness and what the public is being told. You wonder why anxiety and depression are increasing in our society. Honestly, I think part of it has to do with this type of clickbait, how things are framed and presented to us and how we have a split second to absorb that information. Man, that’s going to take a toll on my psyche.”
He concluded in the title of the post: “To whom it may concern, please note how you present your story (sic) to the public about dementia and dig deeper. There are so many wonderful organizations and specialists within this space to reach out to so you can really do your due diligence to hone your story and your content.”
Heming Willis is working on a book for Penguin Random House’s The Open Field imprint. Its launch is scheduled for 2025.